Time may run out

Hello, I am desperate to try and find out anything I can do to help my mom stay alive!! She is hospitalised right now for to much carbon dioxide in her system due to copd. She could get better and live a number of years longer with the bipap machine but because she has dementia and does not understand that this is going to save her life she thinks they are trying to kill her when they are really trying to help her.so as a result she keeps taking the mask off and wont wear it.Can anyone help me? The doctor refuses to tell her insurance she needs one at home to survive. I know that if she were at home I could encourage her to know that that the bipap is her lifeline and begin to trust it and get used to it. Can anyone give me some answers to save her when they send her home without this so I don't have to see her die? Is there any other way to get a bipap machine for her through her insurance?

16 Replies

oldestnewest
  • I'm so sorry to hear you're in such a dilemma with your Mum about the BiPap respirator. I'm afraid I can't offer any solution to you. I just wanted you to know we're here to listen & answer if we can. 

    I presume you're in USA as you mention insurance. 

    There are others here who use BiPap & they hopefully can give you some advice. 

    I hope you get the answers you need & wish you & your Mum all the best 💐

  • Why is the doctor being so unhelpful? Is there anyone who works in dementia support you could get onside. There is no easy solution but l do.hope you can find one soon. Good luck. Xxx 

  • Hello, The doctor said he cannot prescribe a bipap machine to her insurance because she will not leave it on to help her. She is in ICU right now and with her dementia she does not understand what the machine is doing for her. Because of this he will not prescribe her one and wants to give up and just send her home to pass and that is what's going to happen, unless I can get the bipap machine for her at home. This is the most saddest situation I have ever had to face.

  • Your poor mum must wonder what is happening. If.you cannot persuade her then l don't know what can be done.

    Dementia is so awful and changes everything and everyone. My mother in law has it.

    Xxx 

  • Sorry, I just don't understand why the Dr is being so unhelpful. As far as I am aware its illegal to supply a machine in the States without a note from the Dr even secondwindcpap.com/ who sell recon and s/h machines have to comply. Only option is to ask straight questions of the Dr - why is he refusing? And see what his reasons are.

    Best wishes, hope you get it sorted

  • My heart goes or to you both-such a difficult time dealing with the medical issue and it's made worse by a disagreement with the medical staff.

    Does your mum have any advanced directives where she says what her ceiling for care would be; this could affect a doctors decision not to administer the bipap. I know with my mum she was clear that she did not and could not tolerate those machines and didn't want to go through the trauma of one- while she had capacity to make that decision we had to honour it.

    Alternatively you could argue that your mum doesn't have capacity to make that decision either acutely because of the acute respiratory failure or long term due to dementia. You would be acting as her proxy essentially.

    If she is having an acute respiratory failure that can be managed in a hospital setting then the hospital won't send one home. You should ask what her blood gases are reading now. This machine is subject to very strict guidelines as to administration and I know in the UK they very rarely give them to copd patients.

    The other reality is a difficult one. Your mum may just not like the machine. I know it's very traumatising for patients and it can be quite claustrophobic and I hated the thought of the trauma my mum would have to go through with it.

    You are in my thoughts- let me know how you get on.

  • I think that it's so difficult for you to make the medical teams understand that with your support your mum could get used to the bpap machine. They do give these out to COPD patients in the uk and I have had mine for 8 years now. It gave me a new lease of life and enabled me to carry on working. My carbon dioxide exchange is fine and it helps me so much when I feel short of breathe. I don't even think they are very expensive in the grand scheme of things. Is there nowhere that you can find that has dementia patients using bpap where you could get some advice and practical help.

  • Does she trust you? could you try putting it on in front of her and showing her it's ok? other than that I'm sorry I don't have any useful advice.

    Take care xx

  • Hi worrywart. I'm so sorry I don't hsbr any useful advise, just wanted yo let uoi know We're thinking of you & your Mum your in my thoughts & I hope you can get De help/ advise really soon

  • Have you tryed with you wearing a dummy mask and pipe to show her that it is ok to wear one as it will be strange for her try no just ones but a few times as by the sound of it she is frightend of it as it will be new for her ( lets but it this way the wife bort me a nee car as my old one is dsmage and i will not drivr it as i am frightend as the gear stick is on the dash and i have never driven a car like that in my 38 years of driven so i leave it wear my son put it when he fech it home for me yes i do like the car as i was the one who pick it i am frightend of the gear stick and the brake as it is just a swivh and it might be the same for your mother try with a dummy mask and pipe but make shour she can not see the end 

  • What a very sad situation for you, worrywart.  You don't say how advanced your poor mum's dementia is, but it can take quite a while for someone without dementia to get used to sleeping with a bipap machine, and they understand the need for it.  If you could persuade her to wear it, would she remember or resist again the next day?  An ongoing daily struggle may just distress you both even more.

    I do hope the hospital can help you find some solution and send my very best wishes to you and your  mum.

    Tee x

  • Hi am sorry to read about your mum dementia my dads got alzheimer's is truly horrific being ill and trying to care with someone suffering them conditions.

    Later stages of disease effects breathing and eating .. Tend to choke a lot more as the forget how to eat and that causes infections.

    With my own dad he as no medication as he suffered heart failular so is to dangerous to give him meds.

    Truly Is devastating condition IS even harder when it's someone you love SO to that point I would say the might be lot more going on than aware off.

    I would go and chat to your doctor as I assume your a advocate carer 

  • How I wish there was something I could do for you and your Mum.  I feel your desperation, and cannot understand why the doctor is being so obstructive. I sincerely hope someone on here can show you a way to get the help you need so badly.

    xx

  • I feel terribly bad for both of you. I pray that things will straighten out and allow you to have more time together without a lot of terror. Blessings.

  • I use one of these myself and the setting sometimes need to be changed if your oxygen levels alter so im not sure how you would manage one of these without having support  from the respiratory team but if you tell the doctor there will be someone with your mum surely they can send one home for her and then just work at getting her to keep it on.

    It will make a massive difference to her because high c02 will be having a big affect on her mentally too it makes you really confused and tired ...I actually fell unconscious for a couple of seconds while watching tv and drinking a coffee ..it was a very scary experience  

  • perhaps they could sedate her for a little while,then put the mask on,ask th docter to give you a letter so you can get one,my god help you

You may also like...